From NICU dad to citizen scientist: Creating a smart pulse oximeter

Morris Family
Jon and Sarah Morris with 7-year-old twins Drew and Emma

When Sarah and Jon Morris’ twins were born nine weeks early, they embarked on a journey largely dictated by their children’s medical needs. While son Drew was thriving, daughter Emma was severely compromised and was transferred to Boston Children’s Hospital’s Neonatal Intensive Care Unit (NICU). “We felt powerless,” remembers Jon. “Every time we thought we had made progress, we had a setback. It’s always two steps forward, one step back in the NICU. That backwards step always hit the hardest.”

After 296 days at Boston Children’s, Emma went home tethered to breathing and feeding tubes. The Morrises had a pulse oximeter at home to regularly test Emma’s blood oxygen level.

There were frustrating limitations to Emma’s oximeter: Numbers would fluctuate, conditions would change all the time, and if Emma took a turn for the worse, there was no way to formally recall her pulmonary performance. The Morrises were unable to share information in time to help clinicians make decisions. To top it off, the oximeter was yet another line attached to Emma as she slept, adding to her discomfort and making it difficult for Jon and Sarah to safely leave her bedside.

Pulse oximeter like the one the Morrises had for Emma

Fast-forward six years to 2014. With the acute phase of Emma’s medical journey thankfully behind her, Jon signs up for Hacking Pediatrics — an event sponsored by Boston Children’s that gives parents, clinicians and entrepreneurs the opportunity to collaborate, “hack” and find innovative solutions to particular pain points in health care.

“I’m one of those people that says, ‘I can either be part of the problem, or part of the solution,’” says Jon. “I knew there had to be a better, smarter way to monitor oxygen.”

Jon had the pain point, but not the solution. At the 2014 Hacking Pediatrics event, he presented his pain point to the panel and then lined up with the other presenters, hoping to be approached by interested collaborators. Through a kind of organized chaos, stakeholders milled about and gradually found each other.

“I was so nervous,” Jon says. “I felt like I was back in elementary school, where I was the last person to get picked for kickball. Then all of a sudden, I had 15 people around me asking questions. I realized that my problem was apparently not unique to me.”

In the end, Jon became part of Team Emma, along with Minyoung Jang, MD, an otolaryngology resident at Boston Medical Center and design engineer Jeff Mekler. Together, they developed a model for a discreet, wearable pulse oximeter whose data can be monitored in real time.

“Being surrounded by the best and brightest was invigorating,” says Jon, then a high school educator and now a school administrator in Melrose, Mass.

Jon, Minyoung and Jeff had two days of preparation. After waiting for 15 other teams to finish, Team Emma got on stage to make a three-minute presentation to the panel. Jon was nervous. “There I was with an idea based on six years of frustration and feeling helpless. I knew this was an opportunity, not a second chance. I had to make it work.”

Each team member spoke — about the pain point, the product idea and the business model. They finished their last two words exactly at the three-minute mark. Pleased to have endured the experience, Jon collapsed in a chair at the back of the room as the awards were presented. “I heard them announce various awards, and then I heard our team name. Everybody turned and looked at us. It was so surreal. In all honesty, that was probably one of the most emotional moments I’ve had with the hospital.” Team Emma had won the Boston Pediatric Device Consortium Prize.

Today, 7-year-old Emma is in second grade, free of her tracheostomy tube and full of energy. Some members of the team have moved on, but Jon, Minyoung and Jeff – now of Oxitrak – have pivoted their idea and developed prototypes of their oximeter data acquisition device. This work has gathered and stored more than 1,000 hours of pulse oximeter data.

“We’re making progress,” says Jon, “and we’re hoping to help clinicians get data so they can make the best decisions for their patients – in real time. Even now, when I reflect back on the event and on what my daughter went through, it’s very emotional. To think that I could be a part of making things better for another child like Emma is just incredible. I feel like I’m part of the solution.”

For more on Hacking Pediatrics (next event, January 2017), email HackingPediatrics@childrens.harvard.edu. Learn more about innovation in the Boston Children’s community and beyond at TakingonTomorrow.org.